From the desk of the Hcma ceo:
The Mavacamten Marathon
Camzyos™ Approval This is an exciting time for the HCM Community. The FDA has approved Mavacamten under the brand name CAMZYOS, the first-in-class medication for symptomatic obstructive hypertrophic cardiomyopathy and the first drug developed specifically for HCM. Read the press release here CAMZYOS Patient Portal CAMZYOS Medication Guide CAMZYOS U.S. Prescribing Information CAMZYOSTM REMS (Risk Evaluation and Mitigation Strategy) Our…
Ever Wonder Who’s at the Center of Patient-Centered Care? Look Again
Of all the players in the healthcare system, patient advocacy organizations are often the most disadvantaged when a drug hits the market and they find themselves pitted against health providers, payers, pharmaceutical companies, and policymakers, all of whom want their piece of the financial pie.
The day that changed my life: June 12, 1995
The day that changed my life was June 12, 1995, a Monday. The phone rang at 5:50am, which is never a good thing. I managed to roll over with my 8-month pregnant belly and answer the phone on the second ring. The voice was familiar but panicked it was my mother. “She is not breathing…
Lisa, we have your heart. How soon can you be here?
So there I was holding my heart in my hands while a new heartbeat was in my chest. Talk about surreal moments! The path that led to this moment encompasses 36 of my 48 years on this earth and in this one moment, I came face to face with the very thing that I had hated, feared, and loved… my heart.
HCMA Blog Roll
Updated thinking on HCM genetics
Since around 1990, HCM has been regarded as a disease caused entirely by single mutations in genes affecting a protein in the cardiac sarcomeres. There is no doubt that sarcomere mutations play an important role. But in the last several years, there has been a growing realization among researchers that this cannot be the entire explanation for the causes of HCM. This is because a majority of HCM patients do not appear to carry these mutations, and many people who do carry them never develop HCM. The development and inheritance of HCM are more complicated than was previously thought. However, for patients, many of the lessons previously taught about HCM genetics remain true. Current research may open the way to a much-improved understanding of HCM.
Mavacamten instead of septal reduction?
On April 2, Dr. Milind Y. Desai, a leading HCM researcher and practitioner, will present initial results on mavacamten’s use in severely obstructed HCM patients.
Two new state-of-the-art reviews on HCM
An expert panel of HCM doctors published two state-of-the-art reviews in the Feb. 1, 2022 issue of Journal of the American College of Cardiology. The reviews are aimed at doctors who treat patients with HCM. But they include much information of interest to patients.
Fitness in HCM
Did you resolve to get more active this year? There is a lot of confusion about exercise for HCM patients. Some doctors advise “don’t do anything physical,” while others say, “do whatever you want.” But we can likely agree on one thing – they are both wrong, and the best advice is somewhere in the…
Thanksgiving and gratitude
It’s Thanksgiving in the U.S. But we’re not going to list things we should be thankful for, or rehash the history of the holiday. Instead, let’s think about gratitude, a response to some benefit given to you by someone (or something) else. Mental attitudes have been shown to affect our health. And this seems to…
ICER Publishes Final Evidence Report and Policy Recommendations on Mavacamten for Hypertrophic Cardiomyopathy
ICER has released its evidence report and recommendations. Here is a list of highlights: All stakeholders have a responsibility to facilitate meaningful patient access to multidisciplinary centers of excellence for HCM in ways that do not exacerbate disparities. The manufacturer of mavacamten should commit to sponsoring research that will address the lack of evidence on…
Weight loss improves HCM patients’ heart health
Weight management is a challenge for many. Losing weight is a challenge for nearly everyone who tries it. It can be more difficult for many HCM patients because we often take drugs that slow us down. It’s also hard to study: researchers can assign different groups to different diets, but how can they tell who…
Consequences of obesity for health in HCM patients
Weight management can make a big difference for HCM patients. That’s not just something cardiologists say to lecture you. A 2020 paper, Association of Obesity With Adverse Long-term Outcomes in Hypertrophic Cardiomyopathy, provides some insight. This study by a group of leading HCM researchers from three countries examines the health consequences of body weight in…
News - HCMA and HCM related news
Student Athlete Screenings – COVID
We recently became aware of a policy of a New Jersey family medical practitioner (in your region) that has the ability to create significant misinformation, confusion, and financial hardship. New Jersey Statue C.18A:40-41.6 clearly communicates the role of student-athlete preparticipation physical examinations. The Hypertrophic Cardiomyopathy Association, HCMA, and other organizations in NJ worked to pass…
Two new state-of-the-art reviews on HCM
An expert panel of HCM doctors published two state-of-the-art reviews in the Feb. 1, 2022 issue of Journal of the American College of Cardiology. The reviews are aimed at doctors who treat patients with HCM. But they include much information of interest to patients.
ICER Publishes Final Evidence Report and Policy Recommendations on Mavacamten for Hypertrophic Cardiomyopathy
ICER has released its evidence report and recommendations. Here is a list of highlights: All stakeholders have a responsibility to facilitate meaningful patient access to multidisciplinary centers of excellence for HCM in ways that do not exacerbate disparities. The manufacturer of mavacamten should commit to sponsoring research that will address the lack of evidence on…
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